National Infertility Awareness Week 2018

This week is National Infertility Awareness Week. This post is to bring awareness to the fact that 1 in 6 Canadian couples will experience infertility. 1 in 6! That’s a LOT of people.

Here’s the problem… Most people don’t understand, and don’t know what to say when someone says “we’re struggling to have a baby” or “we’ve been diagnosed with infertility”. Most often people say things that are meant with the best intentions:

“Just relax and it will happen.”

      “Just give it time.”

       “You’re still young, stop worrying about it. You have tons of time.”

     “Just get drunk/go on vacation/do acupuncture/do yoga/stop thinking about it and             it will happen.”

     “My friend’s cousin’s niece had infertility and she’s been trying for 13 years and bam she just got pregnant one day. BTW, she’s like 44. So don’t worry, it will definitely happen for you”.

     “You can always adopt.”

 

Although we know that you mean well, TRUST ME WHEN I SAY:

  1. Infertility is a real  diagnoses. The medical community considers it a disease. Relaxing will NOT help. Also, suggesting that a woman is “too tense” or isn’t relaxed enough places blame on her, as if she’s not doing everything she can. Diminishing the diagnoses with a comment like “you’re too tense” really hurts. You would not say that to someone battling a more well understood disease, would you?
  1. Time isn’t going to help. In fact, in most cases, the more time that goes by, the LESS likely you are to get pregnant. In my case, I have Diminished Ovarian Reserve (my eggs supply is really low). Each month that goes by lessens my chances.
  1. See above. Just because you are “young” doesn’t mean you can’t or don’t have real, diagnosed issues with fertility. It affects everyone differently, regardless of age.
  1. Trust me- I’ve tried EVERYTHING…Including injecting myself full of drugs and hormones multiple times a day for 3 years. We’ve spend thousands and thousands of dollars on doctors and medications… I’m thinking Yoga isn’t gonna work at this point.
  2. Everyone has some kind of story like this. I know it’s meant to be encouraging. BUT… I still don’t have a baby and so I kinda hate this.
  1. Yes, it is an option. A wonderful option for some people. However, to dismiss the fact that we want to make a baby naturally, together, like most people can, is hurtful. I wanted to be pregnant. It’s hurtful for someone to just say “whatever, just adopt”. It’s not that easy. And even then, adoption isn’t a guarantee either.

It sounds like I’m being harsh, but I’m honestly not trying to be. I know it’s hard to talk to someone about something they are going through when you don’t really understand or have all the facts. The most helpful things that I’ve heard are:

“I’m so so sorry you are going through this. I wish I could say something to help, but there’s really nothing I can say to make anything better.”

“I’m praying for you” (I am not a religious person at all, but this always touches my heart.)

“This fucking sucks.”  SO TRUE! It totally does- thank you for putting it out there LOL

“I don’t know much about what you’re going through, but I’d like to learn. Would you tell me about it?”

The thing is, infertility touches every part of your life. Your social life, your financial life, your married life, your sex life. What you can/can’t eat. What you can/can’t drink. What you can/can’t do at the gym. Weight gain. Hormonal imbalances causing you to become what I will politely call “A fucking psycho”.

Infertility totally just takes over and everything in your life becomes arranged around your cycle, your appointments, waiting for a (usually negative) pregnancy test. It is so emotional, and most times you feel very alone. For me, each month over 3 years was another disappointment. And your friends, family, etc, they try so hard to be supportive month after month, but sometimes it feels like I should be more positive so as not to weigh them down… they may not want to hear me complain/cry every single month. My husband may not want to hear every SINGLE thing come out of my mouth relate to fertility. In 3 years, We have had a twin still birth, and a non-viable pregnancy. 13 failed IUIs. 3 surgeries. 2 failed IVF cycles.

No baby.

And so, It is all I think about. Every single day.

And my husband… I think sometimes people forget about him. Not him personally, but in general, the male (or the partner) in the equation. I think it must be so difficult to have to not only go through all these painful disappointments, but to also watch your wife struggle so badly month after month. I don’t think men really talk about it too much either and that must be hard. Please don’t forget about the partners going through infertility. They need support too.

I think the hardest part is that with infertility, there is no guarantee. I think many people don’t understand that. They think that fertility treatments are a sure thing. I’m living proof that that’s not the case.

I think at the end of the day, my wish would be for people to become familiar with infertility, miscarriage and infant loss, and how it affects the people going through it, as well as their families. It’s difficult.

I wish that people going through it would talk about it more openly, more frequently.

It’s not talked about very often. Infertility, infant loss, miscarriage. These are all “taboo” subjects that I think people don’t want to talk about because they are just too sad. It makes people uncomfortable. But sadly they happen so much more often than we know, so let’s break the silence and offer our support openly.  Often people suffer alone because they feel like they can’t be open about these things. But for me personally, it helps to talk about it, and to write about it. So thank you, from the bottom of my heart, for listening xo.

 

 

 

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When Grief Lasts

I recently watched a TED talk on the continuum of grief. It struck a cord with me as the woman was talking about Joy and Grief and how they are not mutually exclusive, but can live together, ultimately forever.

This was comforting to me.

It has been a year and 4 months since we lost our first pregnancy, our two twin babies. I still think about them, every single day. I have a memory box in our bedroom with a baby blanket, the crematorium’s medallions of their identity, and a small paper angel that was given to us when we were pregnant. Each morning I spend a few moments beside their box, holding on to the little blanket, and I talk to them. We also have a frame in our room with their onsies, their birth cards and a small amount of their ashes.

This may seem strange, or morbid even.  But it helps me. I want to feel connected to them.

We continue to go through treatment for infertility. We have been able to get pregnant once again, however that pregnancy was a partial-molar pregnancy and not viable. It ended at 8 weeks. Luckily, our doctor spoke to the oncologists at the hospital and they granted us permission to begin trying again almost immediately, with close observation.

But here we are.

Month after month, negative after negative. Not to say this type of devastation each month isn’t intense on it’s own, because it absolutely is. For me, as an added bonus, each negative just deepens the reminder me of what we lost, how close we were only to have this ripped from our hands with almost no warning. I suppose even if there was a “warning”, there is no way to prepare for that.

They would be almost a year old now… I think about what they would look like. What their little personalities would be like. If I would be pulling my hair out from sheer exhaustion from not sleeping, from teething, chasing them around as they learn how to move their little bodies around.  Anticipation of their first words. I absolutely long for those things. I think about how my husband and I would be as parents. How our lives would be different, but amazing.

Sometimes, I’m “ok”. And sometimes, like today, as I sit in the doctor’s office waiting for next steps, I am just shattered.

I’m tired of having to tell people when they ask month after month what the update is. Where we’re at (or not at). Sometimes I don’t want to talk about it. It’s just the same thing month after month.

I wonder how to move forward. Although they never, ever complain- I worry that my family and friends are getting worn down from how often they need to pick me up. To listen. To hear about the same things. I worry that my husband has seen such a shift in his wife that I’m not the woman he married.

I worry that this blog is going to become a full blown Debbie-downer depress-ville. NOT what I had planned. I guess I’m just being honest but Christ it’s depressing! LOL.

I used to be fun. I think, lol. Well, I used to be more fun anyway.

I feel that I’ve been fairly positive about all that has happened so far, but I’m finding myself losing hope, which is scary for me. I’m at the point now where I’m feeling very unsure. I’m unsure that this will work for us. I’m not prepared to give up, but I don’t know how much longer we have from a medical perspective.

Fingers crossed.

 

 

When sh$t comes out of nowhere..

Just when you think you’re on the mend.

Chris and I had had an amazing day the day before. The weather was beautiful- a perfect summer day in July. We went out on the boat, went for lunch, and played what was my best round of golf to date. Throughout the day, I would catch myself being acutely aware of how happy I felt. This feeling is usually followed by a sort of sad gratefulness, if this makes any sense. As in, I’m so grateful to be feeling a moment of happiness after a year of what can best be described as total crap. It doesn’t ruin the moment, just puts a weird spin on it.

Anyway, the next morning I was feeling great. I went to the gym and had a great workout. After 2 (twin) pregnancies my body isn’t looking as fit as it once did (duh lol). On this forced “break” from baby-making, I’ve decided to  focus on a new goal that is totally unrelated. I’d like to get my fitness back on track and be the healthiest I can be so I’m all set for the next step- whatever that may be. I also feel my best, both physically and mentally when I’m in a good fitness routine.

So anyway, I finished my workout and went to grab groceries before heading home- and I was in a great mood. I walked up to the front door and low and behold, a fundraiser- a silent auction, bbq and bake sale. Nice!

Then I see all the butterflies. Everywhere. Oh god.

I thought to myself- I know what this is… I should have turned around, but in true self torture fashion, I asked- what’s this for?

“A colleague just lost her baby.”

I felt like someone had punched me right in the gut.

I stood there for a few seconds with what I can only imagine as a blank look on my face and then words just came out of my mouth “That happened to me last year”. It was the only thing I could say.

The lady laughed- obviously she didn’t hear me.

“No”- I said. “I don’t think you heard me. I lost my babies last year too.”

She looked horrified. The poor woman. She was just selling raffle tickets…

I walked away and started shaking. I could not stop crying, right there in the entrance to the Superstore. Nice. I probably looked crazy. I got it together and went inside, got a cart. And then there was another stand for a bakesale inside, right next to the sushi bar. More butterflies.

Jesus Christ.

And I just froze. Like, my limbs would not let me move. I knew I wanted to get the hell out of dodge, but I just couldn’t. I just stood there like a statue, staring. That lasted probably 2 minutes, but seemed longer to me… I felt totally paralyzed.

Then the crying started again, and I thought holy shit, I need to grab these groceries and get the hell out of here- pronto. So I just walked around crying like a mental person.

Anyway- I managed to get the groceries, get myself home and calm the F down. Yes- it was sad and yes, no doubt it would affect me. But I was frustrated, and frankly surprised, that it had such an extreme effect on me. I thought I was doing really well, especially after the second loss. I really just want to be able to get to the point where I don’t lose my shit every time I see a butterfly!!! I’m going to blame the hormones…….

One for the books…

People, doctors, keep telling me how unique my case is, and how unlikely and unlucky it is for these rare things to be happening to me. “One for the books”. Oh joy.

Well- looks like I wasn’t done yet being special just yet.

After the D&C, I felt pretty good from a physical standpoint over the next few days. The surgery was done on a Saturday night, and by Monday I felt tired, but good. Tuesday was the same. Wednesday night I started feeling kind of strange, kind of sore. Thursday morning, I felt really sore- like stabbing pain in my abdomen. By Thursday afternoon it was unbearable and I was moaning in pain and calling my  husband to make sure he was coming home right after work. He must have heard the panic in my voice because he came home early. I was writhing on the couch. The pain was very similar to last year, when I was in labour, which was throwing me into a really messed up headspace for some added fun. I had talked to my doctor earlier in the afternoon and told him about the pain.  He had said to take a percoset and to come see him in the morning. I took the pill… it didn’t do anything. The pain started to intensify and I was getting scared. This didn’t feel right. My doctor had left for the day so  I called the hospital’s gynecologist on call, and he said to try taking a naproxen to see if that would help. If it didn’t help after an hour he said, come in.

The naproxen didn’t work, so we booked it to the hospital. They took me in right away, put an IV in and and gave me some morpheine which didn’t really do much at first, until the second dose. Then I was joking around and feeling a bit better. They did blood work and an ultrasound. After the results, they said it looked like a post op infection. My white blood cell count was 28. Rare, they said. About 1-2% of patients get an infection after surgery. I just laughed. Of course I would get one then. They admitted me and started IV antibiotics.

They put me in a room on the same ward as I stayed last year after we lost the babies and I was being treated for chorioamnionitis. Actually, I was in the exact same type of room, at the opposite end of the hallway. A mirror image. The doctor who was treating me was extremely sensitive to the fact that we had history there and immediately said they wouldn’t put me in the same room, which I felt was really thoughtful. One of my favourite nurses that I remember from last year was there when I was brought to my room, and it was really nice and very comforting to see her. She had made a huge impact on me last year. She was so lovely and thoughtful and really did make a heartbreaking situation as bearable as it could be. So truly, I was thrilled to see her.

The morphine was working well and although I needed a few more doses throughout the night I managed to get some sleep. I saw the doctor in the morning and he mentioned that it looked like in addition to the infection, I had lost quite a bit of blood during my surgery and my hemoglobin was extremely low (Hemoglobin is responsible for carrying oxygen to the body’s organs) . Like, HALF of what it should have been. The last measure of my hemoglobin (last year at around the same time) was 140, this time it was 68. That explains why I looked yellow. Ugh.

They decided they wouldn’t give me a blood transfusion because I was young and strong and they agreed to let me “grow back my blood” by myself (as my husband says). I stayed a few days in the hospital and was released with heavy duty antibiotics and Iron pills.

So here I am. Feeling lucky that we caught the infection early, and also that we addressed the hemoglobin issue. It will take some time to get back to normal, but I’m feeling better every day. The doctors said that none of this should affect my fertility treatments moving forward. At this point, that’s kind of at a standstill. We can’t move forward until we get the pathology report back. If this was a molar pregnancy, pregnancy is not recommended for 6 months to a year to ensure no molar tissue remains as this is a cancer risk. This is a concern, as because my reserve is so low, we don’t have a year to wait. We are hoping to have these answers this week… Fingers crossed that we can catch a break on this one…

Is there anybody out there?

I had a harder time coming out of the anesthetic this time. My blood pressure was dropping big time when I sat up and even worse when I stood up, I felt dizzy and nauseous and I just felt like I wanted to go back to sleep forever. I remember thinking man, if Chris wasn’t here waiting for me to get up I would just not. I would just sleep and sleep.

I did manage to get it together enough for them to release me. I don’t remember the drive home. I remember Chris putting me on the couch and he went out to get food and my prescriptions. I slept until he got home. I had asked for a hamburger and fries (I hadn’t eaten since 8:30 am and by this point it was almost midnight so I was starving), which he had brought for me. That was enough to wake me up lol. I felt pretty good, but didn’t have the best sleep that night. I was bleeding which kept waking me up. I was a bit sore the next day, but ok. Mentally, I was surprised at how I felt. I felt sad, and deflated, which I did expect. But, it may sound bad, but to be honest, what I didn’t expect is that this time was easier as there was really never a baby. We never saw a heartbeat. We never saw the shape of their little noses, or their little arms. We were grieving, but we were grieving what could have been. What we had fought so hard for. What we had started to believe could happen again.

I was really mad more than anything. I was just really mad at the universe. Why? Why does this happen AGAIN to a couple that wants this so badly. How could one couple have such bad luck? Again, I know this type of questioning does no good. But still. I’m really, really mad. As I’ve said before, I’m not a religious person. Don’t get me wrong, I do believe there is something out there, but I’m just not a religious person. And frankly, this year, if there is a God… well, we have not been on speaking terms. I fail to understand how “God” could allow what happened with our babies last year to happen. And then when this started happening again this time, I was so angry. But I was also so beside myself with fear, I didn’t know what else to do. I prayed. Those who know me well probably just choked on their own spit. She prayed?!

I did.

A few times.

I think there comes a point where faith, regardless of religion, sounds like a good thing to even the most skeptical. Like, there are all these forces, making things happen around me, I need help. I need a bit of the weight to be taken off me and to know that maybe somewhere there is something larger at play. Something needs to give.

Body betrayal

Blood. Cramping. Not a lot of blood, but blood. Every day.

I was only week 4. I knew implantation bleeding was possible. But, I was also terrified of losing this pregnancy. I know only too well the risk of miscarriage. I knew losing the baby to the same infection as before was very very unlikely, but I did know that my risk of miscarriage was 1 in 4, like everyone else. So I was pretty panicked. I called the doctor’s office and they told me to keep taking my progesterone (this helps baby stick to the lining of the uterus) and to come back in for another blood test. So I did, and things looked fine. My beta was pretty high by this point, which caused the doctor to suspect twins… I was 4 weeks 5 days (4w5d) when I went in to see the doctor, and he said let’s try to see if we can see anything on an ultrasound. We couldn’t. We booked our next ultrasound for 5 weeks, 6 days. We went in- still nothing. Not a big deal… it was still early. I wasn’t too worried. I had started feeling really nauseous earlier in the week and the doctor said this was a good sign. We went back at 6w4d. This is when we should have seen something. A heartbeat. But there was none. The ultrasound took forever. I could see the tech and the doctor with looks of worry on their faces. They looked confused, and disheartened. They spoke to eachother in what seemed like another language, but one where I could pick out a word here and there. The words I did understand were not good.

The doctor  was starting to get concerned about possible complications- ectopic pregnancy (quite rare- this happens when the egg implants in the fallopian tube. This is very dangerous, as the baby grows the tube will eventually rupture and can cause severe internal bleeding which almost always results in the loss of the tube and can also lead to death), or a molar pregnancy (odds are about 1/600- this is when only the gestational sac grows, but no fetus. This can be due to genetic abnormalities, lack of blood flow, etc). The molar was the more likely of the two, as the common symptoms are very high beta, spotting, and extreme nausea, all of which I had from very early on. He sent us right over to the hospital to be assessed immediately, in case it was an ectopic. He didn’t want to send me home if I was in danger of a tubal rupture, so off we went. The ultrasound tech didn’t seem to think it was either ectopic or molar, but she didn’t see a heartbeat either.

Our doctor asked us again to come in at 7 weeks 4 days to check again for a heartbeat.

I said to my husband as we were leaving, “This is so sad. I should feel excited to go have an ultrasound done, but I’m not. I just dread it each time. It’s always bad news”. It was starting to feel like last year. When every doctor’s visit was filled with anxiety. I started to have that feeling of my body betraying me. Again. This did not feel right.

At our 7 week , 3d ultrasound the doctor confirmed again- no heartbeat. 2 gestational sacs (what would have been twins, again) but no evidence of babies. He still suspected a molar pregnancy. If this was the case, we would need to terminate the pregnancy asap with a D&C, to reduce the risk of molar tissue infiltrating my uterus (this can cause serious complications and leads to cancer). I asked him if we could wait a few days before we made a decision. I needed to be absolutely certain there was no possible way a baby would grow before I terminated anything.

We went back that Saturday. I would have been 8 weeks, 1 day. No heartbeat. The doctor had already scheduled me for a D&C that evening at the hospital. We needed it done immediately. Chris and I went home, fed and cuddled the dog, and went to the hospital that evening.

Once it was done, there was a bit of relief. The false hope I had felt over the past couple of weeks was draining. It is really hard to keep hoping for something that you know is almost impossible- that doctors have told you will likely not happen. It’s hard to know your body is pregnant- feels pregnant- you’re sick, your belly is growing, but nothing is actually in there. I think when people say you can’t be “sort of pregnant”…. Well- I’m here to tell you that you can.  And it is awful.

A sign from our babies

I had been dreading the upcoming two weeks… And dreading even more the two weeks that followed that. We had just done our second IUI with our new doctor. We were really confident, we had 4 follicles which was awesome for an IUI- it was the same number of follicles we had with our IVF cycle- so this doctor meant business! The two week waiting period after insemination (or ovulation, or IVF transfer- whichever route you go) is called “The Two Week Wait”. It sucks. It is the longest two weeks ever. In these two weeks you go up and down, have highs and lows, and painstakingly wait minute by minute until you go for your beta test (blood test to test for the pregnancy hormone).

I was having a particularly hard time with this one, because after doing the math, it was determined that we would find out if we were pregnant on May 5th. May 5th is the day before the anniversary of our babies birth and death, one year before, on May 6th. So, I had been trying to prepare myself for that day- for May 6th. What would we do? How would I feel? How could we honour them, remember them in a way that we could repeat each year? How could I get through the day without my heart breaking open and how would I be able to keep breathing in and out? Getting a negative pregnancy test would just make it even more horrible- if that was possible. And then, a week after that was mother’s day. Perfect. Just rub it in, universe. Rub it in.

So yes. This one was tough. I got the call at work, in the middle of the office. “You’re pregnant”, the nurse said, “Congratulations”. I immediately started bawling and asked her to repeat it, and then for good measure, asked again, “It worked??” She said it did, and my beta was 38. I was asked to come repeat bloodwork in 2 days, to ensure the pregnancy hormone was doubling as it was supposed to. Chris and I were ecstatic, obviously. It had been such a terribly hard year, and exactly one year to the day (almost) that we lost our babies, we got a positive test. Unbelievable. I felt that this was a sign from our babies- telling us that they are with us, that they are ok, and that we are loved. I felt too, in a part of my soul, that the babies were looking out for me during such a tough time of year. I felt that they knew I needed help getting through the anniversary, and this is how they held me up and helped me through it.

I went two days later for bloodwork, and it was 329. We decided I should come back again in 2 days to be safe, and I did, and it was over 700. Next step was my 6 week ultrasound!